“Just a CF Dad, trying to make a difference.”
That’s how, Daniel Robles, partner and father of two: 8 year old, Drae, and 14 month old, Weslie, described himself when we first crossed paths via email. Currently living in Sandy, Utah, with his partner, Suzie, of 9 years, it was evident to us at Mission Critical that Daniel was an incredible dad.
Just weeks after the birth of their first daughter, Drae was diagnosed with the ΔF508 strain of Cystic Fibrosis.
Though currently in software sales, Daniel is an avid crossfitter and former snowboarder who rode with many companies including Ride Snowboards, Dragon Optics, Salty Peaks, and 32 Snowboard Boots. In the wake of Drae’s diagnosis, this love of fitness and sports has inspired Daniel to found an event to benefit the Cystic Fibrosis Foundation called the 65 Roses Crossfit 4 Cystic Fibrosis which takes place in Holladay, Utah on Saturday June 10th.
It was my honor to catch up with Daniel this week via FaceTime as he preps for this remarkable and very personal event.
Andrew Wollenberg: Nice to “meet” you!
Daniel Robles: You, too.
AW: First off, I have to give you mad props for your jump roping skills.
DR: Haha, thanks! Having had four knee surgeries, I can’t run anymore but I can jump rope for a really long time. My daughter loves to do it and watch videos of me doing it.
AW: So you have two daughters, right? And the 65 Roses Crossfit Event you are hosting is on behalf of your 8 year old, Drae?
DR: Exactly. Drae was diagnosed with Cystic Fibrosis (CF) at 4 weeks old. It's a pretty rare genetic disease—to have a kid with CF both parents have to have an active gene. There are about 30,000 people in United States with it; there is no cure and life expectancy is about 36 years old.
CF primarily affects the lung function and digestive system. It creates excess mucus which fills the lungs creating a layer blocking your airways—the best comparison they say is to breathe through a straw and that’s what it feels like to have CF.
So Drae does two hours of breathing treatments a day—one hour in the morning and one at night—in fact, this month was pretty rough for her. In May, she spent 16 days in the hospital hooked up to a picc line doing 4 treatments a day. She’s always been super healthy despite the CF—we’ve never missed a day of treatment in her life. CF is a behind closed doors disease. You look at my daughter and you can’t tell anything is wrong. You can’t see on the outside how difficult this is for her.
But Drae is incredible. She does 3 different nebulizers twice a day a day while wearing a vest that will shake her lungs at different frequencies to help vibrate the mucus off her lungs while the inhalation meds will help thin the mucus so she can get rid of it.
AW: She’s been doing treatments similar to that since she was 4 weeks old?
DR: Yeah, it hasn’t been easy. But it’s all she knows and she is seriously such a trooper. She’s the most positive and fun-loving kid. She takes 30 pills a day—these are horse size pills that I wouldn’t want to take and she’s super cool about it.
AW: That’s a testament to your parenting as you give her a positive outlook on the situation.
“You want to be your kid’s superhero.”
DR: We try. We are both parent mentors for newly diagnosed parents, but I would say my partner does a way better job. Dads don’t reach out to other dads like moms reach out to moms—I have shaken hands with dads and said, “Hey man, stay positive. It’s going to be alright.” Whereas moms will reach out to other moms and say “I’m freaking out!” and my partner does a way better job engaging than I do.
I feel like my role is—do you have kids?
AW: I don’t! I’m an uncle though!
DR: That’s awesome! Well, when it’s your kid, if someone were to harm your kid, you’d be angry. You want to be your kid’s superhero. Anything that hurts your kid, you want to take care of them. My daughter has CF and my way of fighting back is to raise money and awareness. 100% of the money we raise is donated to the Cystic Fibrosis Foundation —none of it goes to Drae’s medical bills or for her future. I have been very fortunate to have a good job with a good company. Though if I was a millionaire, I think I would pay all the money in the world for my daughter to have a cure.
AW: Do you find the events you organize give you the support you need?
DR: It’s an outlet and an avenue, for sure. It’s hard for people to understand exactly what we go through. They can keep you in their thoughts and pray for you but at the end of the day, we can’t always put into words what is a way of life for our family. We don’t share too much in terms of the day-to-day routine, but if you come into our home, you would see how it’s part of everything we do. Like we have hand sanitizer on every counter because CF weakens your immune system so the common cold can be pretty bad for Drae.
AW: What is the 65 Roses Crossfit event like?
DR: Oh man, it’s awesome. This year, we have 65 teams with 130 athletes. Our event is this Saturday and we have a cancelation list of people who want to participate. The athletes go through three events—65 reps of 7 different workouts. But people love brutal workouts in the crossfit world. They do 65 wall balls, then do a 65 foot handstand walk and hop on the rowers. It’s nasty!
While these workouts are hard, it’s a reminder that having CF is hard too.
65 Roses is Drae’s favorite event. [“65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease, since Cystic Fibrosis can be difficult to say.] We do a 100 mile bike race. We do bake sales. We do a golf tournament and this crossfit event. She doesn’t have the attention span for golf and she only sees the finish line a the bike race. But she can be part of the whole thing at the crossfit event. And it’s co-ed, so she sees strong women doing it. She sees dudes like her dad.
AW: How active is Drae?
DR: She plays soccer and she’s an awesome swimmer. She’s super active.
AW: Does being active help?
DR: For sure! Even just jumping on the trampoline, shakes things loose. Holding her breathe while swimming—anything to keep the lungs strong.
“Anything we can do to make memories.”
AW: Are there things that you do specifically to enjoy every moment with your daughter? How do you handle that? Having a timeframe is unusual for most people.
DR: Yes, we feel like our time is limited. Material possessions are like, the last priority. Anything we can do to make memories—Christmas she may get one gift, but we focus on giving adventures and will go on trips. This year, I rented an RV and we are taking a trip in August, probably to Banff, Canada.
AW: Time together is so much more crucial than material goods. Were you always that way? Or did this shift after her birth?
DR: No, I didn’t always think that way. I used to snowboard professionally. So from when I was 17 until I was about 26 or 27, I rode for a few companies, traveling around. Her diagnosis changed things for sure. I needed to be home. I thought “I can’t just leave this to my partner.” It was humbling. I was traveling all over just to snowboard and I loved nice things back then. Now, I know I don’t need that nice car—that’s stuff’s not important.
“If there is going to be another CF kid, we should be its parents.”
AW: Something that’s pretty personal is that I know you spent a lot of time trying decide if you were going to have another child. What can you tell me about that journey?.
DR: Ah man, that brings me back. So, because my partner and I both have the CF gene, it was a really tough decision process. At the end of the day, we thought “if there is going to be another CF kid, we should be its parents.” We know CF. We have a daughter that is thriving and is healthy. So we rolled the dice. A few days after she was born, the doctor called to tell me that my second daughter, Weslie, does not have CF and is not even a carrier of a gene which is so rare. There was a 25% chance of her having CF and a 75% chance of her carrying the gene.
I was super happy and excited for a second but the only thing I could think about was how can I tell Drae that her sister doesn’t have it. The whole time my partner was pregnant she kept saying things like “My sister will have it and get shots like me and I will tell her not to be scared.” I knew it was going to break her heart.
We waited about 3 weeks to tell Drae because we wanted her to bond with her sister and try an avoid her becoming resentful of her in any way. When we finally told her, it was the craziest 10 minutes—2 minutes of crying and disappointment and the next 8 minutes of her saying “I’m so glad she doesn’t have CF, that she doesn’t have to go through this. I love her so much.”
AW: She’s mature beyond her years.
DR: We work really hard to acknowledge her and build her up. Saying things like “The Lord didn't think Weslie was strong enough to have it and battle it,” “We are Drae’s Dream Team, not Weslie’s Dream Team.” “There are so many people there for you. You’re their hero.” Statements like that build her up.
AW: What a journey this has been.
DR: I’m pretty determined, pretty motivated by Drae. It can be pretty stressful sometimes because I put a lot of pressure on myself—she made a wish once: “I wish that my dad will cure Cystic Fibrosis.” Of course, I’m like “Oh man, I can’t cure it!!” I’m just trying to fund the foundation and raise awareness. It is such a small CF community but they are passionate and determined to find a cure. In just the 8 years I’ve seen Drae go through this, the treatments have improved so much I am blown away. Who knows? Maybe in five years, she may just have to take 1-2 pills instead of 30 a day.
“My dream is that she outlives me.”
AW: One of the things I am doing with this interview series is discussing the concept of a legacy and what that means to you with your children?
DR: My family is my legacy. I’d want Drae to grow up knowing that. My dream is that she outlives me. I know I will never know what it's like to have CF, but I want her to know I was fighting alongside of her.
I’d like for her to know that she inspired a lot of people to be part of this movement. She was [the] motivation for people to reach deep, participate—people who don't even know her personally but they are motivated to participate.
My partner is great about documenting the process—one of her instagram videos has thousands of views and truly, the comments help Drae when she’s having a tough time. Its pretty cool that they don’t know her and they are moved to give her encouragement.
AW: You're a prime example of how hard a dad will work to support his family and make his children feel loved and appreciated. And the number of people you get involved to make her feel that way is awesome. That’s our mission as a company to honor dads that are doing this kind of stuff—amazing dads that are going above and beyond to improve the lives of their children, families, and communities.
I believe that when you're doing something from the heart, it touches people. There is an energy and momentum that draws people to it—like a moth to the light. Your work is important and it raises awareness and I hope that’s what leads to cures for these kinds of things. If anything, it can help lead to finding one’s purpose.
DR: Totally. However we came to the intersection of having CF in our lives, we agree that we aren't going to let this compromise our quality of life. We aren’t going to dwell on it, or be sheltered, or let our daugher be limited by it. Everyone has a different way through this—what we have done and will always try to do is to grab onto the positive approach.
AW: My hat is off to you. It’s incredible how you have faced this part of your life and really turning it into something inspiring that’s a force for good and change.
Thank you for sharing your fatherhood story—I’m really honored to share it with our Mission Critical community.
Learn more about Daniel's event - 65 Roses, Crossfit 4 Cystic Fibrosis below:
65 Roses, Crossfit 4 Cystic Fibrosis